August 8 is the birthday of Sophia Mirza, a British woman who died of ME at the age of 32. Sophia would have been 41 today.

Sophia Mirza contracted ME in 1999 after a "flu." She never recovered her health, and by June 2000 was bedbound. Like many patients with severe ME, Sophia could not tolerate light, touch, or noise. She developed sensitivities to foods, and was unable to read, write, or even bathe herself. In response to her mother Criona's request for help, Sophia's GP, Dr. Firth, suggested that Sophia had made herself ill so she could "get attention."

Over the course of the next three years, Criona's attempts to have her daughter treated for ME were repeatedly thwarted. Dr. Firth referred Sophia to a psychiatrist, Dr. Baginski, who recommended a clinic that supposedly treated ME. When Sophia discovered that the treatment consisted of Graded Exercise Therapy, she declined.

At that point, the physicians involved with Sophia's case began to threaten Criona."I was told that if Sophia refused to go to Oldchurch Hospital in Romford, or if she did not recover within the following 6 months, that she would be sectioned under the Mental Health Act, then added that if I tried to stop this, then he, Dr. Baginski, would go to the courts to have me removed as the nearest relative. Furthermore, if I did not open the door when they would come to take Sophia away, that the police would be called to “smash the door down”. When I asked how much better Sophia would get by these proposed actions, the reply was given that it was “none of your business, that it was for the courts to decide”. The psychiatrist wanted to arrange for me to see a psychologist so that I could understand the good, that he, Dr. Baginski, was doing to Sophia. I refused." (Sophia and ME)In July 2003, Dr. Baginski made good on his threat. The police smashed down the door and took Sophia to a local mental hospital, where she was placed in a locked room within a locked ward. During the weeks she was confined in the mental ward, Sophia did not receive even the most basic care. Her sheets were not changed, her blood pressure was not taken; she was never bathed, and her bathroom was never cleaned. By the time Sophia was released, the damage had been done. Sophia descended into a "hell-hole" from which she never recovered.

On November 25, 2005, Sophia Mirza died. The official cause of death was listed as acute aneuric renal failure (failure to produce urine) due to dehydration as a result of Chronic Fatigue Syndrome. A subsequent autopsy revealed that 80% of the dorsal root ganglia of Sophia's spine were damaged. (This is consistent with active herpesvirus infection.) The dorsal root ganglia are responsible for conveying sensory information to the brain, so damage to the ganglia would produce pain, sensitivity to sound, light, touch - all the hallmark symptoms of severe ME.

Other SophiasSadly, Sophia's case is not unique. Many patients diagnosed with ME or CFS are not only labeled as psychiatric cases, but are forcibly removed from their families to undergo "treatments" that only make them worse.

In 1986, Ean Proctor, a 12-year-old boy living on the Isle of Man, fell ill with severe ME. By 1988 he was confined to a wheelchair and could no longer speak. In spite of his diagnosis of ME, Ean was removed from his home after Dr. Simon Wessely decided that Ean was mentally ill. He was taken to a psychiatric ward in a hospital, where the staff told the boy that his parents were" letting him die." Because they did not believe he was unable to get out of his wheelchair, they let him soil himself rather than take him to the bathroom. Then they pushed him into a swimming pool, in the belief that he was faking his paralysis. Ean promptly sank to the bottom. After five months of legal battles, the Proctors finally got their son back, but not until they had nearly bankrupted themselves with legal costs.

Karina Hansen, a Danish woman, is still locked in a mental ward in Denmark. After more than a year of "treatment" her health is worsening, but the state will not release her, in spite of concerted national and international efforts.

David, a German boy who was struck with severe ME at the age of 15, was taken to a mental ward after his physician determined that his sensitivities to noise and light were psychogenic. At the clinic, he was forced to exercise. David was "traumatised" by the experience, and never recovered. At age 17 David died of a brain hemorrhage.

And on the home front, the recent case of Justina Pelletier's incarceration in a mental ward made national news. Her physical deterioration while locked in a mental ward could be documented, because the press got involved. Justina became a cause célèbre, to the point that two Congressmen have introduced a law that would prevent medical experimentation on children in hospitals.

These cases, while striking, are not isolated. How many ill children - and adults - have been stuck away in locked mental wards, to be abused, drugged, and ignored? And how many people have died, after years of medical neglect, from complications due to their illnesses?

What Really Killed Sophia Mirza

When doctors are unable to make a diagnosis they almost always place the blame on their patients. Perhaps in a society in which doctors were less arrogant, this would not be the case. But in our society - which has given almost god-like status to physicians - if a patient does not get well, it is because the patient does not want to get well. The subsequent psychiatric diagnoses saddled on these patients are numerous - somatoform disorder, factious disorder, Munchausen's - but they all amount to "I cannot figure out how to fix you, therefore you are to blame."

Once people are branded with a psychiatric disorder, they cease to be human beings. Their civil and legal rights are revoked, and they can expect no compassion. Psychiatric patients are isolated from friends and family, who are almost universally considered "enablers." They are drugged into a state of compliance. And rather than attend to their needs, which are considered part of their "illness," staff members can, on doctor's orders, legitimately engage in active abuse, which is justified by relabeling it as "therapy."

Cases like Sophia's, or Ean's, or Karina's, or David's, or Justina's raise some very important questions, one of which is "Should anybody, under any circumstances, be treated like that?"

Another question is "Who decides what is real?" What special training qualifies social workers, school nurses, and petty bureaucrats to determine what is and is not real? For that matter, which course in medical school trains physicians in the finer points of reality?

Sophia's decline can be directly attributed to active medical neglect. But as long anyone in an official capacity is allowed to make the determination of what is real and what isn't, the physicians and bureaucrats responsible for contributing to Sophia's demise will never be held accountable.

Who Decides What is Real?

The idea that an illness is not "real" arises from the concept that people whose illnesses cannot be easily diagnosed by physicians must be faking it. There is an inherent problem with this line of reasoning.With a few exceptions, mental illnesses are "all in your head." There is no identifiable physical cause for the majority of them. They cannot be confirmed by a medical test, and there is no cure. The treatments are, at best, palliative, and, at worst, fatal.

Yet, insurance companies pay for treatments for mental illness. Why do they spend money on illnesses that are imaginary? And why do therapists have a 991-page manual describing these "not real" illnesses? If all one has to do is convince the patient that he or she does not have a real illness, why are there hospitals, clinics, hefty fees, and a pharmaceutical industry built around these illnesses?

Furthermore, if these illnesses are "all in your head" then why aren't evil eye and spirit possession included in the DSM V as well? If physicians actually believe that physical symptoms can somehow be created by the mind, why isn't there a diagnostic code for voodoo? Are there levels of unreality in which some unreal illnesses are more unreal than others?

Even more bizarre is the notion that if you believe that you have an organic (real) illness, but the doctor can't find a test to confirm it, then your belief that your illness is organic proves that it isn't.

That brings us back to Sophia Mirza. Sophia was diagnosed with ME, a neurological illness her doctors did not believe was "real." Eventually, Sophia's "unreal" illness killed her. Her autopsy revealed that there had been a real problem all along. Yet nearly ten years after Sophia's death, doctors still don't believe in the reality of ME/CFS. Nor will they ever as long as cultural myopia is permitted as an acceptable basis for medical opinion.

After asking for photos of people who had died of ME/CFS, I received an email from David's mother. (She has asked that her name not be published.) David's story is tragic - all the more so because he was so young.

How many young people with ME/CFS are being locked in psych wards and forced to exercise? How many of them have died? How many more must die before government agencies take notice and put a stop to the medical abuse of our children?

In February of 2011, at the age of 15 ½, David had an acute infection with fever, along with inflamed, suppurating tonsils. He took antibiotics, the fever went down, and everything seemed to go back to normal. Shortly afterwards he developed back pain. He had been working very hard in his garden, carrying heavy stones. This seemed the reason for his back pain.

The following months he seemed to be functioning, but afterwards we realized that he was suffering quietly. None of us knew about his sleep disturbance, because he never complained. He only told me about the pain, so he was seen by orthopedic doctors. But we didn’t understand why no treatment seemed to really help. At the end of summer vacation 2011, he told me one evening that he was not sure if he could manage school. I thought these were strange words from our son, who was very diligent regarding school.

By the beginning of October he was no longer able to attend school. He could barely move and lay in bed like a statue.

After a few days our family doctor referred him to a children’s hospital. They did many tests for orthopedic and rheumatic illnesses - there was no result. That was where David heard for the first time: 'It is no wonder you feel so bad, if you don't move at all...' The hospital's psychologists said it could be 'all in his head'...

After 10 days of no test results and no progress, we took David back home.

At home, he got physiotherapy for his back, but now he seemed to develop strange sensitivities and odd explanations for his bones and joints hurting - a fact that augmented the impression that it was 'all in his head'.

Our family practitioner was very concerned about the fact that he was at home, and 'nothing was happening' while David was getting more and more ill. In October he could walk the 2 km to the physiotherapy office, but by December this was no longer possible, and nobody could understand why. He lost weight although he ate as much as he could - and that was really a lot! – but he hardly moved.To make the following months short: There were no positive results from any test, and every absent finding made the impression stronger that there was something very wrong in his head. Only we, his parents, said, “We’ve known him for 16 years now, and there is something not right with the explanation that his symptoms are only signs of major depression or somatoform disorder.”

The only measureable outcome was a very high NSE [serum neuron-specific enolase] in December, but after an intense search for neuroblastoma - with no confirmation - the value was declared as a laboratory mistake.

We lost confidence in our family practitioner, but had no alternative. She urged us to go to the psychiatric hospital. We believe she did this to free her of the responsibility she felt for the situation. She was not willing to order the tests we requested, such as testing epinephrine levels. Her reaction was “Yes, we could do this at some point, but NOW it is the time to ask a psychiatrist...” That told us that she had already made a psychiatric diagnosis. We felt that there was something wrong with this, but we had no clue what the heck our son was suffering from. We kept searching for help, and I found a way to test his epinephrine levels as he was at home (not so easy if you have no doctor), but the results took weeks.

During that time we took David to a psychiatric hospital with very heavy hearts, but our question there was, “We don't know what he is suffering from. Can you help him?”

After one week, we got the answer: “He has no major depression, he also has no incipient psychosis (as one doctor assumed weeks before). We don't know what he has. But NOW we have to get him moving, because activity is the most urgent thing he needs.”

While he was in the psychiatric hospital, David got worse and worse. He got no help or attention for his physical needs. His oversensitivity to sound was very acute at this time but they made no compensation for this. He was traumatized.

In the second week of his time there, we got the results of the epinephrine test he had taken weeks before. All his hormones were very, very low, nearly alarmingly low. We showed the results to the doctors and asked for follow-up, or for more testing. The answer was that the tests were designed for detecting an overproduction of these hormones, so these results are meaningless. A few days later, David was taken to the locked ward.

With the knowledge we have now, and from our experiences over the following months, we now realize it was a miracle that we managed to get him out of the locked ward. Our reason was that we wanted to try to figure out what was happening to David with an endocrinologist. (But I will never understand why it was impossible to ask the endocrinologist at the hospital for advice?! David was in a university hospital, and all the specialists were right there!)

After 2 1/2 weeks in psychiatry David could no longer walk more than a few steps, so we had to lay him down in our car, because he could not sit for the 1 1/2 hour trip. He never recovered to the level he had been before being admitted to the psychiatric ward.

I had made an appointment with an internist who was a specialist in epinephrine problems a few days after David came home with us. It was he who diagnosed David with ME/CFS. At first the diagnosis was only a hunch, but time proved him right. Nine months after David was forced to leave school we finally had a diagnosis - of something I never had heard of before.

The following months David got slowly, but steadily worse. Mainly his oversensitivity grew. From December 12 until February 13 he was in a poor, but stable condition, so we gained hope for things getting better, we thought we reached the bottom of the valley.

Then, in the middle of February, he crashed in a way we could not imagine before. Each week, almost every day a new low point was reached.

One morning in the last week of March, my husband heard a strange noise and went to see what was going on. He found David on the floor, unable to move, in terrible pain. But he was conscious, recognized his father, and was able to speak.

David was brought to the ER, where they found a large brain hemorrhage. They couldn't stop the bleeding, and after some hours, a second brain hemorrhage was found. They transferred him to a hospital with a neurosurgery unit.

He died 28 hours later without regaining consciousness. His father and I were with him until the end. His brothers and sister came this last day and said goodbye to him.

None of the medical professionals we met in his last two days ever heard of an illness called ME/CFS or was familiar with the symptoms David had.

Three weeks after David’s death, I went to a meeting of ME/CFS patients and care givers. This meeting was my first contact to patient groups - before that we didn't have the time, the strength or the knowledge about what was possible.

David’s parents wrote the following letter to the health minister of Rheinland-Pfalz

Dear Health Minister,

Three weeks ago we lost our 17- year old son David. He died after two days at the intensive care unit as a result of an unstoppable brain hemorrhage.

Before his illness he was a normal teenager with no problems at school. He played cello for 10 years, planted his garden with devotion, cared for his birds, had a passion for chemistry and biology, and never knew a minute of boredom.

A year and a half ago he had become so seriously ill that he couldn't attend at school anymore. Nine months ago, after a long odyssey, he was diagnosed with ME/CFS.

The last months of his life he was so ill that he couldn't bear any sound, or the presence of other people. He couldn't handle intellectual information. Daily life was nearly impossible for us and his siblings, because all of us knew that every sound gave him unimaginable pain.

In the last two days of his life, many clinicians cared for David: First aid helpers, ambulance crew, emergency doctors, intensive care unit crew, neurosurgery OP-team, and a further anesthesiologists and neurosurgery intensive care unit crew - not one single person of all these experienced and well-prepared people had heard about an illness named ME/CFS before.

Our dream is that in the future no ME/CFS-patient has to face the situation where the ambulance crew needs to spell the name of this illness into his walkie-talkie.

And that no seriously ill child have to wait nine months for a diagnosis, during which all treatment attempts worsen his symptoms, as took place with David.

And that parents, who have the unsolvable task to care for a seriously ill ME/CFS-patient are not threatened with the withdrawal of custody and don't get letters from the government office for youth welfare.

They need help, support and empathy, and in very hard times the chance to get care for patients outside of their homes.

In the whole of Germany there is no means for meeting the special needs of patients with severe ME/CFS.

It is our dream that this fact will be changed.

If David’s pain and our loss will change something, then we will be glad and thankful.Please do all you can to make this happen!

Author

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About me:I'm a 25-year veteran of CFIDS. I know what it is like to be bedbound for long stretches of time. I also know what it is like to recover, and to relapse. But this blog is not about my personal experience. It is intended to be a resource - a collection of anything that might be helpful to the CFIDS community: book reviews, advice, CFIDS news, research, advocacy, opinion, who's who in our community, fundraising... and occasionally a bit of humor.

Disclaimer: I am not a doctor, which means nothing I write, no matter how sensible it may be, should be interpreted as medical advice.